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We encourage you to listen to this emotional discussion of Penny talking about her son Jack who very sadly recently passed away, most likely from SUDEP (sudden unexpected death from epilepsy).

SUDEP can occur in people with epilepsy who are otherwise well.

Epilepsy Tasmania CEO, Wendy, has previously said “No one knows what causes SUDEP and we can’t predict who will be affected. It’s often easier for us to avoid talking about death, to shy away from raw and potentially heartbreaking conversations.” So we are especially grateful to Penny for her bravery and willingness to share during this very difficult time.

“It is confronting to know that most people with epilepsy are unaware their risk of premature death is three times that of the general population,” said Wendy. “Or that they are less likely to live to the general life expectancy of 80 to 84 years of age; the mean life expectancy for someone with epilepsy is just 52 years old.”

Epilepsy – A Focus on Tasmania, (released early this year and available to read on our website) highlighted that across Australia approximately 300 people die from epilepsy each year. The cause of these deaths can be due to having a seizure while driving or swimming, a brain injury, stroke or accidents – but half are from causes unknown (SUDEP).

Epilepsy Tasmania provides resources and support for Tasmanians living with or affected by epilepsy. Our nurse, social worker and support staff are all available to continue this conversation in person, over the phone or on our Facebook page and private Facebook groups – so please reach out if you need us.

Only with the courage to have these difficult conversations can we begin to prioritise the importance of research and of finding a cure for epilepsy.

Listen to the interview here.

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Did you know that 90% of people who do experience the condition (along with those who support them) – feel discriminated against and often suffer from feelings of isolation?

These figures come from a recent survey of Tasmanians with epilepsy and to find out more, Paul McIntyre spoke with, Wendy Groot is the CEO of Epilepsy Tasmania.

Listen to the interview here. 

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